April 29, 2013

Our investigation of unexplained CKD among rural workers began as a story about a single plantation in Nicaragua. Then, it became several plantations in the region; next, nearly the entire Pacific Coast of Central America; and most recently, Sri Lanka and India as well.

CKD among rural workers may be a broad international epidemic — and we need your help to figure out how widely it is occurring.

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UDDANAM, India — A tangle of green blankets the land amid thick tropical heat. Shady groves of cashew trees strew the ground with juicy, perfume-scented fruits. Men can be seen climbing coconut palms to tap into the trunks for wine. The region’s name, Uddanam, comes from a word in Sanskrit that means “Beautiful Garden” or “Paradise.”

Uddanam’s rich terrain seems an unlikely place for the mysterious strain of illness tormenting the area. For more than a decade, a rash of chronic kidney disease has been striking down the villagers of this remote agricultural belt in the state of Andhra Pradesh, India. In some villages, the disease has impacted from 24 to 37 percent of the population, two to three times higher than elsewhere in the district, according to unpublished results from a study by Harvard Medical School.

As the death toll mounts, the seemingly idyllic region has become stigmatized. In contrast to Nicaragua’s “Island of the Widows,” which is named for the alarming rate of chronic kidney deaths among the community’s husbands, residents of Uddanam say they now have trouble getting married at all.

“Other people, they don’t want to come for marriage,” said Dr. Priya Prathibha, the state medical officer in the hard-hit village of Varaka. “They are not giving any bride or bridegroom to this area, this Uddanam area.”

Uddanam’s victims have much in common with those of the unexplained epidemics in Sri Lanka and Central America. They come from farming communities and are mostly poor. Few suffer from diabetes or hypertension. The climate is sweltering, toxic pesticides are used liberally, and biopsies show the rare pattern of tubulo-interstitial kidney damage. This type of damage accounts for less than 4 percent of end-stage renal disease in the United States, and is consistent with severe dehydration and toxic poisoning.

Yet in other ways Uddanam is different. The research to date suggests the disease is confined to a single belt of villages that spans less than 100 miles. Despite men’s traditional role in the fields, both sexes are affected almost equally, teams from Harvard and Stony Brook University found. Farmers of several different types of crops — coconuts, cashews and rice — are all affected.

The known impact is also smaller: from 2007 to 2012, a total of 1,520 people required treatment for kidney disease through the state health program. Even if several times as many are in the latent early stages of the disease, its geographic and humanitarian scope is more contained than in Central America or Sri Lanka.

“Our hypothesis is that an exposure to something in the environment, whether it’s in the soil or in the water or both, is responsible for this,” said Dr. Ajay Singh, a nephrologist at Harvard Medical School and the co-leader of the Harvard study.

The research has yet to offer definitive answers. Not a single study has been published on Uddanam CKD, nor do any official statistics measure its scale or reach. Among the scientists and the villagers, confusion and frustration reign.

“They come to you and they don’t understand what’s happening to them,” Singh said of Uddanam’s residents. “But they do understand that they’re dying from the disease and there are no resources to help them out and something needs to happen there.”

A Family Tragedy

Hyamavathi and Prameela Bendalam have lived the tragedy that has left many Uddanam families frightened of consenting to marriages. Both were in their early twenties when they married and moved to a village in the region called Varaka. Hyamavathi was about 23 when she married her husband, a coconut and rice farmer named Venkataramana Bendalam, in 1990. Prameela was about 20 when she married Venkataramana’s brother Rama Rao, also a rice farmer.

The marriages made the women “co-sisters,” and they began living together in the Bendalam family compound. For more than a decade, their husbands worked the five acres of rice paddy and coconut fields owned by the family.

In 2005, their husbands began to experience difficulty urinating. Both were initially diagnosed with urinary tract infections before traveling to visit doctors in Visakhapatnam, also known as “Vizag,” a city more than 100 miles away.

“They were unwell, but we didn’t know a disease had hit,” Prameela said. “Then we found out that they had kidney condition, when we went to Vizag.”

The illness left the two brothers feverish and nauseous, and eventually too sick to work. Both took medicines to relieve the disease’s symptoms, but the family could not afford dialysis. Prameela said the cost of the treatment her husband did receive was more than 60,000 rupees, close to $1,100 at the current exchange rate.

The family had to take out loans, and then to gradually sell off their land. Prameela and Hyamavathi took care of the two terminally ill brothers. “The both of us were in a lot of pain and misery,” Prameela said.

In 2007, Venkataramana and Rama Rao died less than a month apart — on November 25 and December 23, respectively.

Prameela and Hyamavathi remain in the compound, and now work the single acre that remains of the land cultivated by their husbands. This labor provides their only income beside the thousand rupees (roughly $18) each month that Prameela’s son Siva earns as a teacher in a private institute.

“I borrowed money thinking that he would survive,” Prameela said of her husband. “But he died, and now the loans have to be paid back as well. This is bad karma, full of suffering.”

Since their deaths, the state government of Andhra Pradesh has established new programs that assist Uddanam’s victims. A statewide health insurance program for the poor now covers the costs of dialysis. State-of-the-art dialysis centers have been established in several cities through a public-private initiative led by Dr. Ravi Raju Tatapudi, a leading nephrologist who served three years as Andhra Pradesh’s director of medical education.

But almost all of the area’s nephrology and dialysis services are in Vizag. The costs of travel and of medicines that are not covered by the insurance program are still prohibitive for many families in Uddanam.

“They have dialysis but they are 200 kilometers away,” said Sham Sundar Puriya, the village head in Patha-Varaka, a sub-community in Varaka village. The residents “cannot go to that place because of lack of money, so they are staying here and dying here.”

Uddanam lacks doctors. There are no full time nephrologists stationed within 100 miles of the region, and local medical officers must refer their patients to distant urban facilities. Dr. Prathibha, the medical officer who lives in Varaka, says the fear surrounding the disease has left “even doctors” scared to live in Uddanam.

“If they are not coming,” she asked, “who will?”

Frustration and Fear

Since the 1990s, when Tatapudi and other nephrologists began noticing the unusual strain of CKD in Uddanam, various theories of the disease’s origins have emerged. Most have centered on toxic exposure. An unpublished study by a team of researchers from Uddanam and Stony Brook University concluded that the disease is “most likely to be the result of a chronic exposure to an environmental agent.”

Dehydration, another possible factor, has received less attention. The Uddanam area is brutally hot, and farmers spend long hours in the fields.

Dr. Goru Krishna Babu, a researcher who conducted door-to-door surveys in Uddanam for the Harvard study and grew up nearby in Andhra Pradesh, said the heat was so overwhelming one day, he had to stop and lie down while carrying out the surveys. “One of the things I took pride in was that whatever the temperature was I could sustain myself,” he said. “But one of the days I literally had to lie down on the bed.”

So far, the efforts of the Stony Brook, Harvard and state government researchers remain tied up in delay. None have published studies that point toward specific suspects. A lab test by Stony Brook that tested local water for contamination by any of 42 toxic chemicals, including heavy metals such as arsenic and cadmium, revealed nothing out of the ordinary, said Kate Dickman, a pharmacologist with the Stony Brook team.

The most visible sentiment in Uddanam is frustration: that the years of research and promises haven’t brought results. As the deaths continue, many residents have become fearful of living in a land so beautiful it was named after “Paradise.”

“So many people are leaving,” said Siva Bendalam, Prameela’s 20-year-old son who helps support his family. “If the disease continues, no one will be here.”

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